Abstract
BackgroundAustralian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face ‘double disadvantage’. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability.MethodsSemi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis.ResultsNineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers.ConclusionsTailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.
Highlights
Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population
We used a qualitative approach using thematic analysis underpinned by phenomenology to facilitate understanding experiences of carers for Aboriginal children with a disability. [23].The sampling frame consisted of participants who were parents or primary carers of Aboriginal children aged zero to eight years who attended a developmental clinic at an Aboriginal health service in a suburban area near a capital city in eastern Australia
Bearing the costs In spite of the Australian context of universal health care and specific policy initiatives aimed to reduce costs of healthcare for Aboriginal and Torres Strait Islander peoples, such as Closing the Gap [25], carers in this study reported that financial costs incurred as part of their caring roles strained resources and exceeded their capacity
Summary
Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Family carers of people with a disability are subsuming greater responsibilities while caring for people at home [1, 2] They are often required to fill in the gaps in fragmented service and support systems through their caregiving [2]. Influence of specific contexts on the caregiving experience While similar impacts of caring for a person with a disability have been reported across populations, contextual differences highlight the need to explore the experiences of parents/carers/families within priority populations, or those who experience health inequities, as they may face unique and additional challenges [7]. Obtaining a better understanding of the caring experience in priority populations, is important in facilitating access to supports [9]
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